Partial molar and molar pregnancy support thread - all welcome!(694 Posts)
I thought I would start this thread as a place where anyone who is going this or has gone through this in the past could share experiences, vent about life, etc.
After a MMC at 12 weeks and an ERPC a few weeks ago I've just found out the cause was a partial mole. I've been referred to Charing Cross and am waiting to hear back from them to start the monitoring etc.
I know the chances of cancer developing are about 1/100 but I'm still struggling with the 'OMG I'm going to die' feeling at the moment, plus the grief and stress of the miscarriage itself.
I haven't told anyone in RL, other than dh, even friends who know about the miscarriage. I'm worried abut how they'll react and that I'll end up blubbing.
Sorry for your loss, and that you're feeling awful - are you feeling any better? Can you ring Charing Cross or wherever you've been referred for advice? I've just had the all clear this week, and hope you aren't far off, given your normal results
Does anyone actually post on here anymore? I went into hospital on the 11/09 for a D&E operation after excessive bleeding for a few weeks, i was told then it was to remove missed products from a miscarriage. A few weeks later i got a surprise phonecall from the hospital to explain i had a suspected molar pregnancy. It was all a bit of a blur on the phone to be honest, i just zoned out after hearing certain words.
Anyway it was confirmed as a complete molar pregnancy and my first set of blood results were normal. I bled for 2 weeks after the operation, stopped for a week and then bled again for 5 days. ( i thought this was my period)
On Wednesday last week i started to bleed again, not too heavy but seemed period like. Im panicking, i had sex earlier that evening and now im wondering if theres an issue.
I even went to hospital and was basically told i was stressing out. There was no blood clots or abdominal pain but now im bleeding when i wipe and have some throbbing pain.
What is going on with my body?! Ive been a nervous wreck since finding out.
Excellent news on your levels stealth, I'm down to Hcg of 7 as of Tuesday so going good in the fight direction too. I've been told CX have my slides and will have looked at them byou Friday of next week. Also waiting to see if I get a period next week and if this shifts the last of the retained stuff that won't budge. Consultant wants me back for another scan after this to check. 8 week post MMC so far and it seems like someone has stolen the last two months, last time I felt normal it was hot and sunny.
HJP How has your week been? really home you are home and all has gone well for you.
I got my test results- levels are back to normal! They haven't looked at my samples yet but assuming that's OK and the next test I hope I'll get signed off in a month.
How are you getting on Hj? Not long to go!
Sorry to hear about your hair and feeling crap Monkey. Mine often seems to fall out in autumn anyway for some reason
Hi Stealth and Hjp........it'd gone a bit quiet on here so I've only just seen your messages.
Hjp sorry to hear you've ended up at CX, I hope they are looking after you. How is the treatment? Rubbish wifi and no tv sounds like time will drag, can I post you a book or something? (Seriously, PM me if you'd like!) I'd be going mad! Can DH bring you a tablet with a few films on to watch?
stealth must be good news on your levels if you've had AF. It took about three days for my first results to come back and I've got my second tomorrow. The lady at CX was lovely on the phone again and I had yet more questions for her......
I've been getting tests and scans at the hospital too so I know my Hcg is reducing, I've had 64, 30, 22 and 10 so far so that's encouraging. Scans are not so good as I've still got retained product after two sodding ERPC'S. Consultant has said he hopes this will come away if/when I get a period, I'm to wait for this then contact him for another scan. He's happy that CX continue to monitor my levels now too. Pretty sure I've ov'd recently as had pains, positive OPK and delightful spots so should know in a couple of weeks.
To add to my general crap feeling my hair is falling out in great handfulls. Doc thinks it's just "one of those things", I blocked the hoover twice this week plus the shower. Very shallow I know but I'm finding this hard on top of everything else, usually have long thick fair hair, am going to have it cut into a short bob as all I've got left are fluffy rats tails! Bleugh.
I'm moulting more than the cat!
The wifi is useless and they don't have TVs here! 😱
If it's your first result it will take a few days, what day did u have it done last week? If it's not your first result it should definitely be ready..
Well I hope they made it today- and if not then that you can call or Skype them ( assuming the WiFis ok - where I had my erpc it was faster than ours at home!).
Do you know how long it takes charing cross to test samples you send in? I sent my first last week and am hoping I can call and get them tomorrow
Good to hear from someone!
I've only been here 1 night. My husband and 2 children have been in today which was nice but it's so hard when they leave. 😢 We live 2 hours away so it's a long way for them to come and then get home again. They are going to try and come again tomorrow but then they will be at school/preschool from Monday... I know it's only a few days but it feels like forever. I'm on a ward with other cancer patients that have been here for over a month so I guess I should count myself lucky!
Hello Hj very sorry to hear that. How long have you been there so far? Have you got people coming to visit?
Hi everyone sorry I went a bit quiet on here it's all been a bit of a crazy horrible emotional time for me. Unfortunately I have found myself ended up in a bed at Charing Cross hospital having chemo. A very scary and lonely time. I have to stay here for 6 nights. The staff are all lovely but this feels like a nightmare!
Glad all of your results seem to be coming down that's great news.😄 Mine are still 25000 (they started at nearly a million) so still a long way to go to get to <5...
How did the tests go, Monkey? I sent my first ones off yesterday- fingers crossed. I also had some bleeding last week that I think was af, so feeling positive
That sounds like really good news stealth, deffinately below 25, from what I've read it's very rare to be so high it'd not show and you'd be feeling really poorly too if that was the case.
Impatience got the better of me this morning and I did a first response test I had left over, pale line still for me but I think they detect down to 12ish so as long as I'm below 30 on thursday I'm heading in the right direction. Weirdly I've stopped bleeding today, I'm glad of the break but given I was warned I'd bleed and pass tissue this week after the consultant saw my scan I'm now worried things aren't moving at all. This is certainly the worst sort of touture, currently feel like I'm loosing my mind.
So I took the test this morning and it said not pregnant! Given it had a sensitivity of <25 then I'm hoping that's good news ( just ended up reading an article saying if hcg is very very high then poas can come back negative, but it's rare and I reckon I'd feel it if hcg was massive..). Hope you're all doing well
Thank you! Just bought poas weeks test so I'll try it in the morning. The price of those things is crazy! I know is not very accurate but on the off chance it's low it would be good news
Hi stealth, I'm really sorry to hear of your loss and the mole diagnosis today too. It just seems like one thing after another doesn't it.
Everyone else seems to be a bit quiet on this thread currently and although I'm sorry any of us have found ourselves here I'm glad to here from you.
I'm about a week ahead of you, five weeks since my MMC and first ERPC. I had my second ERPC as they just thought I'd got retained products, it was only because I went to see my GP with bleeding (I was told I'd have none both times, so don't worry) after this I got pushed for follow up back at the hospital. I asked her about the posibilty of a partial molar because of the bleeding and the fact that I was still getting postive pregnancy tests. The normal pee on a stick test will tell you there is hcg present, but won't give you a 'number' and you'd not be able to compare accurately enough to tell if your levels are reducing. Charring Cross will look at bloods and urine to monitor you. I had a blood test on Friday at the GP's and it was 64, I had another yesterday and my levels had dropped to 30 so going down but the hystology results combined with something concerning/increasing on my scans has made the consultant refer me. I don't understand my low levels as thought if the mole was growing they'd shoot back up.
I called Charring Cross today as just wanted to know what to expect, the lady I spoke with was fab, she'd already got my contact info but no notes or anything else from the hospital , she explained they'd request my slides and review to confirm the diagnosis but had my testing pack ready to send to me. Here is a link to their contact info, the rest of the site is good too:
www.molarpregnancy.co.uk/contacts.html let me know how you get on, I'll keep you posted but I think I've had enough google time for today, my head is going to explode.
Hello Monkey and all
I'm new - partial mole diagnosis today after mmc and erpc a month ago. Very sorry to hear of all your losses and of Monkey's lack of support. I hope we can all help a bit.
I'll get the referral to Charing Cross next week. Is it worth taking a pregnancy test in the meantime, and if so is there a kind that tells you more than others about levels? I've had pretty much no bleeding since erpc which I'm not sure whether is a good thing or not...
Hi Hjp and anyone else still here, I've used this board lots since my MMC but now things have stepped up somewhat and I don't know where to turn.
A quick (not) introduction.....
I had a MMC five weeks ago today. I was 10+3 baby measured 10+. I had an ERPC the next day. I continued to bleed for three weeks and continued to get postive HPT's, I also needed a week of antibiotics for a suspected infection. After a few calls to the EPU I was asked to come back in for a scan. I was found to have retained products and told only option was to have another ERPC with a camera, to be carried out by a Consultant. This was done two weeks ago and was physically much harder than the first one.
I was discharged on the same day bleeding heavily and passing grey/white bits (awful). I've bleeding heavily since this, had cramps and passed more tissue. I spoke to my GP who got hold of the Consultant and called me back in last week. I had another scan, inconclusive, womb full of blood and another course of antibiotics. I've also been told I've got fiberiods (small internal and external) plus a cyst on my left ovary. I had my follow scan and appointment yesterday. There is a now a mass in my womb although my Hcg has fallen from 64 to 30 in a week. The Consultant has told me the pregnancy has now been confirmed as a Partial Mole and I've been transfered to Charring Cross for follow up and treatment. I have another appointment next week locally to assess my need for a third ERPC with ultrasound to clear my womb if it doenst happen naturally this week.
I'm just so worried, this was my first and much longed for pregnancy, I'm 40 next month. When I thought I just needed to recover from the first surgery then I could try again I was coping although still heartbroken for the baby I'd lost.
Now I'm just terrified. I'm confused as to why it's taken so long to work out what was going on, I've had nothing but apologies from all the doctors about the delays and I've been offered details for PALS to raise a complaint (not some thing I want to do). I'm frightened about future treatment and so worried that at my age any delay in being able to try again is massively reducing my chances of becoming a mum.
My husband has come to my appointments but is adamant I should not be upset about any of this as the Consultant said I'd be fine after treatment. He's not offered much support after our miscarrige past the first week. He's been very angry with me being so upset firstly about the loss of the baby and latterly about all the ongoing physical problems I've had. He's not very forthcoming with shows of emotions usually but this has really broken me. Whilst waiting for my diagnosis yesterday he booked an overtime trip with work and left for a four day trip to LA at 05.30 this morning.
I don't know what I'm really asking, but if anyone in a similar position or anyone who has been through this wants to compare notes that'd be great, I don't have any girl friends who've had a MMC let alone anyone who even seems to know what a PMP is. I just feel very, very alone.
Is anyone still on this forum? I've just been diagnosed as having a CMP and had a SMM op yesterday. My levels started at nearly a million so am expecting it to take a long time for them to drop 😞
Been reading some of the stories on here and am so sorry for everyone going through this. Xx
Sorry for the late reply. I've been away. I have good news. The day I went to have my 1st urine and blood hcg test with the GP, my period came within 2hours of it being done. I took this as good news while I waited for Charing Cross to ring me. They phoned the following week to say my hcg levels were undetectable, so that means they were less than 2. I was delighted and said I thought they had dropped because I had had a period, and the lady confirmed that you will not have a period unless your hcg levels become less than 100. Something I didn't know. So anyway, my results were worth waiting for. Undetectable is great news, although she did warn me that this does not mean "out of the woods" and that monitoring will have to continue because if the mole is going to grow back, it's usually within the 1st 6months. So, the monitoring will carry on as planned but I am relieved that the 1st result was a good one.
How are you? Did your histology report confirm it was not a molar pregnancy? You must be so confused, and I feel for you. Having a missed miscarriage myself I understand your grief of the loss you have suffered. But for me, and others on here, knowing the reason for the loss (although not comforting) can sometimes help in the grieving process. But it is a loss no matter what, and devastating no matter the reason. I'm sure for you this must be a very confusing and sad time, but very important that you've been informed correctly as to whether or not this was a molar pregnancy as I'm sure you know the dangers of another pregnancy if it had been molar. Are they absolutely sure it wasn't molar? Have you seen your histology report?
On another note...have you had any luck conceiving yet? And have you been seen yet by the IVF consultant? Keep us updated on your progress. I'm keeping my fingers crossed for you.
As for me I have to send another sample to Charing Cross in 2 weeks to continue the monitoring process, and fingers crossed all will continue to be good news. For all of us on this forum.
Hi Molar. Sorry to take so long to answer. Congrats on getting your period (feels weird saying that doesn't it?!). I too got mine 4 weeks and 2 days after the Erpc and was really pleased. My gp told me that to have a period my hcg would have to be 0 and then would have to wait 1 month after that. it must have not taken long for my levels to go back to 0. It was also quite light so maybe that is normal after an Erpc?
It turns out that my pregnancy was not molar in the end. I am of course pleased but still don't understand why I had hcg levels of 24,000. I suppose it is a mystery and I just have to accept that I will never know. We've been ttc again but not confident. We've been referred for ivf and after my gp saying all my tests came back fine that wasn't quite true. I have quite high fsh levels but hopefully we can go ahead with ivf soon.
Have you had anymore results? Hope you are as well as you can be.
Yes that's how I feel. The more periods the better (surely???!!) I also feel that it must be a good sign, and although the hcg level may not yet be "normal" hopefully the fact I have a period must mean that I should be close to normal. I will hopefully find out in the next few days from Charing Cross.
This period was a bit strange though, not like my usual ones. Mine are usually very heavy and last 7days. This one is very light and has only been 5days...but still a period :-)
I am sorry for your loss. Are you still being monitored or have you completed it now?
Molar to answer your question, I too felt relieved when I got my period back after more than 6 months. I can't remember the exact figures but I think my HCG levels were still around 50 when it returned. So lower than it had been but not yet 'normal'. I think it then took another 2/3 months to get to normal. I felt though that each period was helping 'clear things out' as it were.
Just thought I would update in the hope that you ladies could maybe advise me.
I went yesterday to my GP to have my 1st urine and boos test done for Charing Cross. I had my D&C nearly 6 weeks ago and have been waiting for my period since then. I arrived home from the GP- ...and I have a period!! I might be jumping to conclusions but a massive weight has been lifted from my shoulders...because I have read in this thread that other ladies who had their period was a sign of good news, because that means that the Hcg is very low/ normal.
Am I right in thinking this? I imagine Charing Cross will give me my exact results early next week, but I already feel lighter. So here's hoping it's good news from here on in.
Have any of you been told that having a period means that everything has gone back to normal, and then had it confirmed by your bloods/ urine? I know the follow up is a long process, but just wondering really if having your period for you meant the beginning of good news. Would love to hear your experiences, and I'm looking forward to hopefully being told what I think I already feel....that my hcg is of no real concern being that I now have a period. I am happy to go through the follow up care, but just feeling relieved because a period surely can only be a good thing now 😊
Thanks ladies, and I hope you are all doing well?
How are you? Did you ever get your histology report? Have you found out yet whether or not it was molar? I'm sure this has been a terrible time for you, especially that your fertility appointment came through. I really hope you hear some good news and can start ttc ASAP.
All is the same with me. Still no period and still feeling like I should be expecting 1 any minute, but nothing so far.
Have my 1st blood and urine test tomorrow since the confirmation of molar pregnancy and then the results will be sent to Charing Cross. I hope to get some good news early next week. Though I'm not too sure what "good news" is because I have no idea what the hcg level was at the time of D&C. But it is a relief to finally get this testing process started!
I feel for you, and I'm am terribly sorry for your loss. Keep me posted on your news. Keeping you in my thoughts
Molar - I am really sorry to hear about your loss and it must have been such a shock to find out it was a molar pregnancy. I really hope that your levels go down quickly and your period comes soon too.
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